Life with Phoebe Heaven-Side

ZOO Day~

Grief is a strange animal. One moment I’m fine, the next I am blubbering to Benjamin on the way home from the grocery store about Phoebes and life and how it will change. Most days are good; I try to stay in the moment lest I use up these precious hours with pre-mature self pity and sadness. I know it’s God and that yes indeed His grace IS sufficient, because it oft occurs to me that I should be plummeting into the depths of despair right now. There is a super-natural buffer that He is manifesting in my life that keeps me even-keeled and from teetering over the precipice.

I know the precipice is there, but I’m not going there today. Not while she’s still here.

There is plenty of time for that later.

Today was rocky. We took her to the zoo. She loves animals usually, and getting out and about, but it feels like the time for these types of outings might be past us now. She is easily upset, emotional, and sensitive to light and noise and activity. She stopped for the birds and we enjoyed some giggles in the bird habitat where they flew all around us. Patrons can buy bird-seed on a stick and the birds will allow you to hold them. She laughed and squealed and ducked when birds flew close by.

I will see this moment in my mind’s eye on some distant day when I take the boys back to the zoo and step inside that bird habitat again.

Thoughts like that punch me in the gut every now and then. The going on without her, and yet seeing her everywhere I go. Stopping at a gas station on a family road trip…Nathan takes the boys to the bathroom, me and Phoebes go together..now I will go alone. The only girl.

This is where my thoughts take me, so I try my best to stay in today, in this moment. For each day has enough trouble of it’s own. And there’s eternity to spend with her and I hang my hat on that.

We left the zoo early, she was shaking due to low sodium and she was wanting me to hurry past all the animals in her desperate quest for relief from the pain. Her noggin is bothering her as the pressure grows. She doesn’t like to lie down and has a difficult time getting comfortable when she does. We have given more pain meds today than we have before and she seems to respond well to that so far.

Next week we will start palliative radiation to hopefully slow down the tumor growing in her brain. This is not a curative treatment, nor can it be for Phoebe. This treatment is to make her as comfortable as she possibly can be. Ten days of short radiation sessions have the potential to reduce her pain and pressure in her head, shrink the tumor a bit and/or slow down it’s growth and give us more time. I say potential, because not all of those things are certain to happen, but it is definitely worth the try. She should have minimal side-effects from the radiation, maybe sleepiness, but it should be fairly uneventful.

This will not damage her cognitive skills..it would over years, but not in this instance. So, we will be travelling to and from Dallas and/or staying in Dallas for some time during the next two weeks.

Deacon started play therapy/counseling on Monday and really enjoyed his counselor. The big boys will receive counseling too at some point, but Deacon is really struggling and doesn’t know how to express it, so we wanted him to go right away. Please pray for his grieving little heart. He pushes her away and feels guilty about it, it’s just so much for a five year old to deal with.

Nathan and I could use prayer too of course, for peace, for wisdom in how to talk with the boys, for good communication, and to be on the same page in regards to Phoebe’s care. It’s all very messy at times, and I literally forget why I walked into a room, or what I am doing, or what I am saying several times a day. I have read this is typical, but it is frustrating not being able to focus on anything.

Thank you again, to all of you, who mow our yard, bring us meals, send Phoebe cards and messages of love, help out with the boys, and write encouraging notes to us. All of this is so appreciated, please know how surrounded we feel, and supported.

~ Amey

Share this:

Like this:

Related

About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th.
A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle".
We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms.
We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated.
Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope.
Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

Post navigation

God bless and keep you all! How I have wished I could say something to make you know how Phoebe has impacted my life. I spend more time with my grandchildren, and I know that I won’t be here with them forever… time flies by each and every day. YOU have taught me that I need to do all that I can to help prepare my grandchildren for the day when they won’t have me around. I have prayed so hard for Phoebe and for your family…and I continue to pray for all of you. You are all an amazing family…. Bless you all!

You have been running a marathon since all this began. I have been praying Isaiah 40:31 for y’all among other things. “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”

Never a day passes without my thoughts of all of you. I pray for Phoebe to have comfort and to be able to enjoy even the littlest of things as she did at the zoo she was a child able to see the birds if only for a short time this made her smile which is good. I pray for strength for all of you to be able to help your children at this time and comfort each other. I pray for the words to come from my heart to hug all of you I send love and prayers for each of you God bless all of you ❤

Our prayers go up daily for you and your family. I sit with tears only able to imagine your pain and knowing only The Lord can give you wisdom and peace I see how God has directed all the difficult time for you so far I’ve read your words through the months and see wise parents, hurting parents but wise and Godly parents. God will continue to give you wisdom and help you deal with this pain with your family as a whole. We pray daily for Phoebe and her headaches and the stress she feels and doesn’t understand.

I just now realized that this was a WordPress blog, and I can actually “follow.” I have been praying for your family, for a while, as we are friends and church members with Terry and Summer. My heart breaks for you, and I pray daily, first for a miracle, and then for God’s peace on you and your family as you endure this, should he choose not to work the miracle. It’s so hard to understand, but I guess we don’t have to. Your faith is incredible.

Oh Amey, I am so very sorry for all your pain. God bless you all with peace & courage, grace & mercy. He loves you all so very much. Thanks for your keeping us up on the latest. I know how hard that is. it is beyond hard. Your family is in my prayers daily. I feel like I know you all & love you very much. Stay strong. It’s amazing how much strength God gives us when we need it most. Love & blessings, Elaine

Lord, please continue to give Phoebe all the comfort and joy possible. We sure don’t understand the why of all of this, but You do and we know we can trust You in ALL things. Touch Nathan Fair, Amey Stevens Fair and the boys in the many special ways they need to be touched in, as only You know their needs the best. Bless, Bless, Bless this family beyond all measure. All according to Your Will, In Jesus’ Name, Amen

Your precious family is in my constant prayers…to take each day and squeeze a moment out of it for a life time. I can’t begin to fathom what you are walking thru…but I know the One who is holding you, the One that is carrying sweet Phoebe. There are no words…except you are greatly loved. May His grace peace and love be overflowing in you all.

Amey, I’ll never meet her in this life, but give her a hug from me. I’m sitting at a bus stop, crying. I was praying for y’all earlier and it eerily just the prayer you are requesting for how to continue as a family, to love and healm

Dear Amey and Nathan, this just breaks my heart in two. I’ve been on this journey with you since the beginning of the surgery, standing beside you from afar just praying and praying, fasting and praying and praying some more. I just wish I could mow your lawn and cook for your family but distance stops me from doing this, so I will continue to support you and your family in prayer.

Lifting all of you up to Father seeking His healing hand on Phoebe, peace and comfort in the family and His presence so thick you can smell Him.

First, I think of how lucky Phoebe is to have been blessed with her Fair family here on earth, how truely blessed she has been to be surrounded in your love … so many suffering children go unloved in this life.
Secondly, how wonderful a God we have to assure His plan for Phoebe included each & every one of you in this Fair Clan!
There are no words …. but, I think of you & yours & find a li’l bit of my own strength & inspiration in every single word you write.
I love you & every member of your family …. I know you through every word you’ve written Amey & cling to faith in His plan with you.
Always in my prayers …
K

The reality of the situation is filled with a myriad of emotions and your posts continually peel back the layers of grief, loss, joy, gratitude, hurt and the list goes on!! Thank you for your vulnerability and transparency!! Love and prayers for you and your precious family Amey!

Cheri S Perry

“It’s your life, your one and only life- so take Excellence VERY personally!” Scott Johnson

You might not remember me I live out in Puerto Rico now but serve in YWAM TYLER for a while… please be encourage that even out here in PR there are whole churches praying for you all… and YES still believing for a miracle… when you feel weak know there are people being strong for you… may his grace soround you today…

We are praying for you all. And we are here for you. Please call, text, email for whatever help you may need for that day. Lets us know if hospital visitations are allowed. Let us know if we can bring your meals everyday to the hospital, if you will have a place to stay in Dallas close to the hospital and if you would like for us to do your laundry and bring fresh cloths to you at the hospital. Whatever it is.
We totally respect your privacy at this moment, so we haven’t done much. But please call, Nathan has my number from last year or you can tell Dede.
Much love and much blessings,
To another great day.
Priscilla

I don’t personally know y’all, but your family has impacted my life in these last few weeks to be a stronger Christian. Your precious girl is in my family’s prayers and thoughts. I am praying God wrap His loving arms around y’all and give you peace and comfort that you can feel. I will be in prayer for your son Deacon as well. Love in Christ, Lindy

Amie and Nathan – – I am part of your extended Phoebe prayer team. My husband had a heart transplant several years ago and so many well-intended folks meant well when they made suggestions but I only needed God and miracles, not humanly advice. I don’t mean to mimic their intrusion so please forgivve me when I mention that a dear friend, neighbor, and Hospice volunteer has a ministry making fully customized plaster casts of hands, usually praying or holding something dear (like a paint brush for example), then bronzing and mounting the cast as a forever memory. If you have no interest whatsoever, please forgive my intrustion (I understand!) and know that you have more prayers warriors than you may ever realize. But if you are at all interested, her name is Anne and her ministry is called Anne’s Hands. anne.art1@me.com If this ends up being something you decided to do, Anne will send me the bill and I will pay it in full. Praying without ceasing —

Every time I think of you and Nathan the word Faithful comes to me. You’ve been faithful as parents, friends, spouses to each other and faithful in listening and walking with The Lord. I’m heartbroken over Phoebe and hate cancer but also beyond challenged and encouraged by your lives. It’s an honor you know you and I’m honoured to follow your journey. Thanks for sharing. I love you both.

You have no idea how your daughter has touched my life, and how inspired I am by the strength of you and your family. I have never even met Phoebe, but she has found a place in my heart and you are so lucky to have a beautiful and amazing little girl like her! I will continue to pray for your family.

So. Painful. I don’t understand what it feels like, although I’m continually brought to tears. I just read every word you write, Amey, and am overcome…Phoebe, we all are moved by you though we don’t know you. Your story makes us think of eternity, where real life begins.

Here you are Nathan and Amey, faced with all of this and being righteous and upright like Job, blessing the name of the Lord.

We continue to stand with you in prayer, asking for mercy and healing, for His glory.

I am a friend of Jessica Hobbs. I live in Dallas and work at UTSW. Could I bring y’all dinner sometimes while u have to stay in Dallas. Just let me know what u like and dislike and I will deliver it to wherever u are. Just let me know
Denise Link

I am sorry your and your family’s time with Phoebe is being cut short here on earth. I want to go on to tell you that God loves you. He adores each one of you. I am sure you know Jesus wept and He weeps with your grieving hearts now. I dream to have my one child live with me a long time on earth and into eternity with our Lord and Savior; however, I admire your ability to go on for the sake of your family and live the moments fully as Phoebe can. What a strong little girl you have. I am sure those sweet whispers she tells you will forever hold dear to you. The pictures are beautiful. There is sadness and love in them. May the Holy Spirit lead you where you think you can never go because your grieving heart aches. May Phoebe not feel the tremendous pain be lessened. May your children find some way to express their hurt and pain as they grieve the loss of their sister. May God touch them and hold them under the wings of His protection. May the Lord provide comfort and rest and peace and hope and love to endure the pain of surviving your child’s death. May God be with you and remind you that He has not forsaken you. With all my love and blessings in Christ Jesus…

My heart and the deepest part of my soul ache with you- with the feelings and then the lack of feelings–the desire for time to stop and the desire for time to move–is this real or am I dreaming—-I am just thankful for my God who is in Control and keeps enough cocoon surrounding us to allow us to continue on during extreme intense times to care for others in our life who need us. GOD DWELL IN THE DEEPEST PARTS OF THIS SWEET FAMILY AND CONTINUE GIVING THEM WHAT ONLY YOU KNOW THEY NEED. I love you and Nathan and Julie and your beautiful children and the rest of your precious family and I pray for all without ceasing. marilyn from TN

Dear Amey and Nathan and Children…
Just wanted to let you all know YOU ALL are in our thoughts and prayers,while I read this post my tears flowed and my heart went out to all of you yet again.

I can not comprehend what you all are going through during these days,these very precious days….
I am committing to continue to pray for you all…sending Hugs and Prayers and so MUCH LOVE from Ontario,Canada….
Phoebe,dear I am sure you are not yet old enough to realize how many lives around the world YOU my dear little darling have impacted,YOU have such carisma sweetie and you are a blessing to so many of us,even tho I have never met you darling YOU have INSPIRED me many many times.

Amey and Nathan
You are AMAZING, YOU two have such stength, some days it may not feel like you do however I am telling you,you are ENCOURAGING and STRENGTHENING alot of people around the world,your openess into your lives has IMPACTED me and I know it has impacted MANY MANY people,YOU can truely feel your heart and your strength and so many days your joy and your pain….(we can never comprehend what this journey is doing to you guys or your family,one thing I do know tho is that YOU are APPRECIATED DEEPLY and PRAYED for often….and you always always WILL be LOVED and APPRECIATED and PRAYED for God WILL never leave or forsake you guys,and one day when you all meet on that Heavenly shore,I am POSITIVE God will say ”WELL DONE my good and Faithful Servants well done….)
Blessings and Huge Hugs….